Exploring the Experience of Dementia
Exploring the Experience of Dementia

Part 1: The Experience of Dementia: Personal Stories

Here we introduce two people who share their personal experiences with dementia in the early stage of the disease.

They talk about their feelings after diagnosis, adjusting to changes in their life and looking ahead to the future. They also share some important advice for finding support and continuing to live a full and meaningful life.

Roger's Story

Roger Marple was a tireless advocate for the rights of people living with dementia. Despite his own diagnosis, Roger chose to live life to the fullest and, with the support of family and friends, he proved it was possible. He was an outspoken champion to ending the stigma against people living with dementia and was a compassionate and committed spokesperson for those who often felt neglected and unheard.

He was a sought-after speaker and participated on advisory groups and research committees to ensure the voices of people with lived experience were included in planning and decision making. He was also instrumental in the development of the Canadian Charter of Rights for People Living with Dementia. Roger received numerous accolades and awards for his work.
At the time of his death, Roger was a member of the Board of Directors of the Alzheimer Society of Alberta and Northwest Territories. To honour him, and continue his legacy, the Roger Marple Volunteer Award was established. The award recognizes a volunteer who exemplifies the qualities and efforts Roger embodied in his daily life and work on behalf of the Alzheimer Society and those living with dementia.

“As a person living with dementia, here is a promise I will make to all of you……. I promise to recognize what hope looks like for you living your life to the fullest, with the time you have left, so you can live a good quality of life. And most of all, I will respect who you are.”

Roger Marple
1957 - 2022

Watch this video and meet Roger. He talks about his early experience as feeling like he was in a “sea of despair” and “being trapped in a hamster wheel” in his mind.

Roger acknowledges the challenges of living with a diagnosis. And he highlights the importance of being proactive to “put things in place” to help navigate the changes ahead.


"My hopes and dreams in life haven’t changed and I make it a point to do meaningful things in my life just as anyone else would. If anyone reading this who has been diagnosed with a form of dementia or has a loved one who lives with this disease, I feel this is the first thing you need to know. We all live with a terminal condition. It’s called life. The same thing applies to people with dementia."  - Roger Marple, from Medicine Hat, Alberta.

Watch the three videos below, and meet Chris Nelson.

People living with dementia can struggle with everyday tasks. In these videos, Chris talks about how her frontotemporal dementia affects doing tasks such as banking, eating in a restaurant or shopping at a grocery store.

The Experience of Living with Dementia while Banking


The Experience of Living with Dementia while Dining at a Restaurant


The Experience of Living with Dementia while Shopping at a Grocery Store


For reflection...

After you listen to the conversations, take a few minutes to reflect on the following questions.  Feel free to make some notes.

  • How are these stories similar to your own experience?  How are they different?
  • What stood out for you as important messages?
  • Now that you've heard these stories, what will you continue to do as you move forward?  What will you stop or do differently?


More Learning Resources

The Waiting Room Revolution Podcast, Season 1

A By Us for Us Guide: Living and Transforming with Loss and Grief

First Steps After Diagnosis

Myths and Realities of Dementia

All About Me

Getting a Diagnosis Toolkit

Living Safely and Independently